Being diagnosed – the first few weeks
Being diagnosed with HIV can trigger a range of emotions. It is different for everyone so whatever your reaction — it’s normal.
Being diagnosed when you’re well
Many people are diagnosed while still feeling well, with low HIV viral load and high CD4 count. This is often referred to as ‘asymptomatic’ infection. For most people, asymptomatic infection lasts several years, even without treatment. It remains important to have regular contact with your doctor three or four times a year so you can have physical examinations and blood tests to detect any changes in your immune function. Talk to your doctor about starting treatment. There is now evidence that commencing treatment just after diagnosis yields immediate and lasting benefit.
If you have had HIV for some time before you are diagnosed, you may already have a low CD4 count and/or opportunistic infection. The symptoms of a suppressed immune system can include diarrhoea, minor persistent or recurring skin conditions, lack of energy or swollen glands. You will need to start HIV treatment straight away. In most instances, this will not only slow down the progress of HIV but will trigger some recovery of your immune system and make you feel much better. Getting an HIV diagnosis is a big deal, so you may want to:
- Take some time If you’re feeling overwhelmed by your diagnosis it may be useful to take a few days off to de-stress and think through how you want to proceed from here. Your doctor will be able to provide you with a medical certificate for work if you need it. It will not mention HIV.
- Delay big decisions Don’t do anything radical just yet. Your understanding of how HIV will impact your life is likely to change over the next few weeks so it’s important not to make any major life changes until you’ve had time to think things through.
- Get connected It’s important you get the support you need, particularly in these early days. For many people that will mean telling family or friends, however, people react in many different ways so you may want to choose one or two close family or friends you think will handle the news in a supportive way. There will be plenty of time to tell others. Remember, once you have told someone you have HIV you cannot take it back, so think about who will be able to provide support and keep your confidence.
- Seek support There are HIV organisations all over Australia that offer peer support or counselling. These organisations have staff and volunteers who are very experienced and will have a good understanding of many of the issues you are facing. They will often be able to answer your questions. Even when they don’t have ‘all the answers’, they can be a sounding board. You can discuss issues that are worrying you so you can arrive at decisions that work best for you. It may take you some time to work out how HIV fits with your sense of self or sense of ‘identity’. Talking to other positive people about their experiences and how they have coped can be useful.
- Get more information If you haven’t already done so, make a follow-up appointment to see your doctor in the next few days. You may want to make a list of questions to ask. If you are uncertain about your HIV test results, you could also request another test.
- Decide on a health care provider It’s important to develop a good relationship with an HIV doctor. If you don’t feel comfortable with your doctor or if they don’t have expertise with HIV, ask for a referral to another doctor who is experienced in treating HIV infection. The Australasian Society for HIV Medicine (ASHM) maintains a list of doctors with HIV expertise (see bit.ly/ASHM-s100)